Introduction

What comes to mind when you think about dementia? Maybe you think of a loved one or someone in a facility who suffers from Alzheimer’s disease. Maybe you think of a movie scene with someone exhibiting dementia symptoms or a character in a book you’ve recently read.

Nutrition is not what typically comes to mind when people think about dementia. However, nutrition is central to caring for those with dementia. A nutrition care design for dementia that considers health, independence, and quality of life can profoundly enhance the lives of those living with dementia.

What is dementia?

Before we can dive in, we need to define what dementia actually is. This is tricky because dementia is a broad term that includes several different diseases and conditions.

“Dementia” is an umbrella term for diseases and conditions characterized by a decline in memory, language, problem-solving, and other thinking skills that affect a person’s ability to perform everyday activities (1).

Types of dementia

Now that you know what dementia is, you may be wondering what the different types are. There are 11 different types of dementia, but to keep things simple, we’ll review the three most common types and list the other eight.

Alzheimer’s disease is the most common type of dementia, accounting for 60-80% of dementia cases (2). Our brain cells do a lot of jobs which require plenty of oxygen and fuel to keep things operating smoothly. We don’t know the exact cause of Alzheimer’s disease is, we do know that the disease stems from brain cells not functioning well (2). Issues in one area create problems in other areas of the brain. This sequence of events leads to cell death and permanent changes to the brain (2). These changes are what eventually manifest as Alzheimer’s dementia and its associated symptoms.

Vascular dementia is the second most common type of dementia, accounting for 5-10% of dementia cases (2). In vascular dementia, the cause of cell death in the brain is inadequate blood flow (2). Cell death leads to changes in the brain in areas critical for storing and retrieving information (1). Memory loss in vascular dementia is similar to that of Alzheimer’s disease (2).

Lewy Body dementia is the third most common type of dementia, accounting for 5-10% of dementia cases (2). Within the brain of those with Lewy Body dementia, deposits of “alpha-synuclein proteins” (termed “Lewy bodies”) alter brain chemicals. These alterations cause issues with thinking, behavior, movement, and mood (3).

Here is a list of some other, less common, types of dementia:

Creutzfeldt-Jakob Disease

Down Syndrome and Alzheimer’s Disease

Frontotemporal Dementia

Huntington’s Diseases

Mixed Dementia

Normal Pressure Hydrocephalus

Posterior Cortical Atrophy

Parkinson’s Disease Dementia

Korsakoff Syndrome

Statistics on dementia

So, how many people does dementia effect? Worldwide, 50 million individuals have dementia. Each year, there are 10 million new cases. In the older adult population, dementia is a major cause of dependence and disability (4).

In the United States, roughly 50% of caregivers who care for older adults provide care for an individual with dementia (5).

Stages of dementia

Every individual with dementia is different. How they experience it. How far along they are in their disease. There is a lot of uncertainty when it comes to the progression of dementia.

Let’s look at what we do know. There are different stages in dementia. To describe these stages, we will look at the three stages of Alzheimer’s disease (since this is the most common type of dementia). It is projected that an older adult will live an average of 4 – 8 years after being diagnoses with Alzheimer’s disease. But we know some older adults can easily live another 20 years! Progression can be slow and uncertain (5).

There are three stages of Alzheimer’s disease: the early stage, middle stage, and the late stage. The early stage is the least severe, while the late stage is the most severe. Let’s take a closer look.

Early stage (mild):

Usually, in this stage, a person can function independently. However, will notice memory lapses. For instance, they may forget where they put their keys or forget common words.

The following tasks may also become difficult: remembering the names of recently-met individuals, tasks in work or social settings, and planning and organizing.

Middle stage (moderate):

Symptoms of dementia are more severe in this stage. Those with Alzheimer’s disease will usually require more care during this stage. Certain tasks may become harder and memory will continue to decline. However, major details about one’s life may still be remembered.

Frustration, anger, and unexpected behavior are common in this stage. Changes in behavior may become more pronounced. These may include surrounding individuals, forgetfulness, moodiness, and personality and behavioral changes.

Late stage (severe):

Severe symptoms are present in this stage. This includes difficulty holding out a conversation, responding to their environment, and lack control over their movement. Personality changes, problems communicating pain, and the need for ongoing assistance with everyday activities should be expected.

An individual with late stage Alzheimer’s disease may have trouble remembering recent experiences and may be more susceptible to infections, especially pneumonia.

How dementia impacts health

You now know what dementia is, the different types of dementia, a few statistics, and the different stages. You are probably reading this post because you want to learn about how dementia impacts the health of loved ones, patients and clients, or yourself – or maybe all of the above!

A good starting point is the symptoms, signs, and complications of dementia.

Symptoms of dementia

Each person with dementia is unique. Symptoms may be different and vary by the individual person. Keep in mind that these symptoms might be mistaken as a “normal” part of the aging process. However, dementia is not considered a normal part of aging. Concerns about symptoms should be discussed with a medical provider and health care team (6).

Dementia also increases risk of death. Alzheimer’s is the 6th leading cause of death among older adults.

It is estimated that 1 in 3 older adults die with Alzheimer’s or another dementia (5).

Nutrition concerns in dementia

Food and nutrition play a very important role in health and quality of life throughout the entire lifespan. Older adults are no exception to this and require optimal nutrition! Individuals with dementia have some unique nutrition concerns and challenges that we should familiarize ourselves with as we move forward.

Dehydration

Dementia can also cause a person to drink less fluids and in turn become dehydrated. Water does so many important things in the human body. Fluids aid in including lubricating our joints, driving nutrient-rich blood to our muscles, and controlling our body temperature (8).

We need to keep in mind that dehydration has some early, mild symptoms including muscle cramps, dry mouth, and dizziness. These are symptoms that could easily be attributed to medications or other health conditions(8).

Overlooking fluid intake and the early signs of dehydration can lead to more significant consequences. These include rapid heart rate, challenges with walking, and/or confusion, which might lead to a hospital visit (8).

Poor appetite

Decreased appetite is common among older adults – so common that we have a name for it: anorexia of aging (9). Many different things can cause poor appetite in older adults.

Take a minute to think about the cues you get when you are hungry. Those hunger cues tell us when it’s time to eat. But, if these cues start to decline and we don’t have much of an appetite, food intake inevitably decreases. So, if you think about it, those annoying lunchtime stomach growls that we get are actually really important!

Additionally, meal time challenges that many older adults with dementia experience (ex. forgetfulness, trouble using utensils, and inattention) further reduce food intake.

Forgetting to eat

Okay, this one might seem obvious, but there’s a little bit more to it than we realize. Yes, an individual with dementia may simply forget to eat. However, they could forget more specific details related to eating, such as when, how much, or what they ate.

Confusion about these things could lead an individual with dementia to eat several meals or overeat at one meal. They may also eat the same thing several times per day if they’ve forgotten that they ate that food earlier.

It is also possible that a patient with dementia might forget which foods they like to eat and express a general lack of interest in what is offered to them.

Weight loss and malnutrition

Dementia-related weight loss can be caused by many different things. Unintended weight lossand poor food intake can lead to malnutrition, which has serious health consequences. Malnutrition can also reduce mobility, impair posture, decrease strength, and increase fall risk (10).

Additionally, malnutrition can weaken the immune system, prevent wounds from healing, and cause problems in the eyes, brain, and kidneys (10). Malnutrition also negatively affects the heart and lungs, gastrointestinal processes, and psychosocial health (11).

Strategies for increasing intake in dementia patients

Increasing food intake in patients with dementia comes with several challenges and hurdles to overcome. What works for each patient will vary and may require some trial and error. This next section will provide some simple tips that can help patients eat more at mealtimes and boost their nutrition status.

A design for dementia and the meal environment

The environment in which a patient with dementia eats their meals influences their food intake. Two big strategies to focus on with regard to the meal environment are limiting distractions and fostering a positive eating environment.

For many, eating meals in front of the TV while catching up on Netflix or on the computer responding to emails is the norm. However, distractions in the meal environment can significantly reduce food intake in patients with dementia.

Serve and eat meals in a quiet, undisturbed environment. Distractions can range from background noise or talking to a cluttered dining room table. Limit distractions as much as possible and make food the focus!

Eating meals with others may help patients with dementia eat better (12). Aim to create mealtimes that are social and joyful for the patient with dementia. Doing so can help the patient develop positive associations with food and eating, and start to look forward to the experience.

Adequate lighting is important because older adults often require brighter lighting than younger individuals do. In the dining room, it is helpful to add more lights and uncover windows (if possible) to allow natural light to enter the room. Appropriate lighting aids older adults with dementia in seeing and recognizing the foods served to them, making it much easier to eat.

Foods to encourage in a design for dementia

You may be feeling super overwhelmed and confused about what the best foods to feed to a patient with dementia are. The good news is that it’s not all that complicated! A nutrition design for dementia can be simple.

Here are some simple guidelines to follow and things to keep in mind. Remember that food and nutrition are very individual and that each patient’s preferences and needs will look different.

Familiar/favorite foods:

Provide foods that the patient likes to eat. These foods may be more easily recognized and comforting to the patient. Plus, if the patient likes them, they probably taste great! If a loved one has a favorite type of sandwich or a casserole dish that they eat often, offer and encourage these options.

Make small accommodations in food preparation:

If an individual with dementia really likes foods that are sweet, try adding some sweeteners to foods or opting for sweeter fruits and vegetables. On the flip side, more savory foods might be appropriate for a patient with dementia who prefers savory flavors.

Variety:

A healthy diet includes different types of fruits and vegetables, whole grains, lean protein, and dairy. Even though a patient with dementia may be struggling with food intake, do your best to provide a varied diet to help meet their nutritional needs through food. Aim to serve different fruits and vegetables throughout the week (as many different colors as possible!) and expand the protein or whole grain sources, if tolerated.

Healthy fats:

Foods high in fat have more calories in smaller volumes than carbohydrate or protein-rich foods. If a patient with dementia has difficulty finishing meals and isn’t getting enough calories, adding some additional fats to meals and snacks can help tremendously. Doing so will increase the amount of calories the individual is getting from the amount food they are Try cooking with olive oil or adding it to meals, incorporating nuts or nut butters into snacks, adding avocado to toast or sandwiches, or topping meals with cheese.

New foods:

Familiar foods might work great and be the patient’s overall preference, but remember that some patients with dementia actually experience changes in their food preferences or forget that they previously enjoyed certain foods. In this case, be open to what the patient wants and provide the desired foods while remaining aware that unfamiliar foods could cause problems with digestion or create some gastrointestinal discomfort. Always do what is in the patient’s best interest while honoring their independence and desires.

Meal schedule

The generally-accepted three meals per day with some snacks mixed in might not be quite right for a patient with dementia, and that’s okay! Maybe small meals throughout the day will work better or even two larger meals per day. Let them choose their meal schedule and then be receptive to it.

If possible, try to keep the schedule as consistent as possible. Encouraging meals and snacks at the same times each day can help establish a common routine for the patient and might improve their intake. Familiarity with a meal schedule can also help caregivers monitor intake and identify the need for a nutritional supplement or diet modification(s).

Factors that make mealtimes easy and successful

For so many reasons, mealtimes can be downright difficult for people with dementia, health care staff, family members, and/or caregivers. Luckily, there has been some great research on factors that help to make mealtimes easier and there are plenty of things that you can do to make a positive difference.

Colors (Red Plates for Dementia)

A patient with dementia might struggle to distinguish between a plate and a table setting, food and the plate it is served on, or liquid and its container. One thing that helps with this is providing contrast in colors. Serve foods on a plain plate (or bowl) with a colored place mat underneath. This assists the patient with differentiating between the plate and the food, and can make it much easier to eat meals.

Researchers at Boston University found that when patients with dementia were served food on a red plate, their food intake increased by 25% (13). Click here for a whole line of red tableware!

The use of yellow plates for feeding patients with dementia has also shown to be effective for increasing intake in trials by the NHS in hospitals (13).

The texture of food is important

The role of texture in the diet of patients with dementia is two-fold. First, the texture of foods can either promote or discourage adequate food intake. Second, specific texture modifications may be required for patients with dementia who have difficulty chewing or swallowing.

Of course, the taste and smell of foods play a key role in the experience and enjoyment of eating. But we often overlook the texture of foods and how foods feel in our mouth. Eating a dish that one expects to be crispy or crunchy, but is actually soggy, is quite disappointing and unappetizing. As you can imagine, eating foods that do not match the expected texture in combination with decreased appetite and inattention is a recipe for poor food intake.

Be sure that textures are suited to the dish or food served to patients with dementia. If a patient or loved one with dementia has a preference for crunchy foods over soft foods or desires creamy textures complemented by crunchy toppings, do your best to accommodate them whenever possible.

Texture modifications are essential for patients with dementia who also have trouble swallowing and/or chewing. The medical term used for difficulty swallowing is “dysphagia.” In general, soft foods are much easier to swallow and thicker liquids are easier to swallow than thin liquids, such as water.

Dysphagia diets range from pureed to soft to mashed, and fluids can be thickened to the appropriate consistency or purchased pre-thickened. Following a dysphagia diet reduces one’s risk of aspiration (food accidentally entering the lungs), which can quickly create many serious medical problems for an older adult, such as pneumonia (14).

Follow all instructions from medical providers carefully when preparing food for an individual on a dysphagia diet. These modifications are critical for safety and permit adequate intake even when swallowing is challenging to perform. A geriatric dietitian can help you navigate dysphagia diets and assist with food preparation techniques!

Finger foods

Because many individuals with dementia have a difficult time using eating utensils, we need to discuss the best food alternatives that allow us to get around this challenge. Our goal is to maintain independence, so we must strive minimize the use of feeding assistance.

How do we do this? With the help of amazing finger foods!

Finger foods are a wonderful “plan B” for patients with dementia who aren’t able to use eating utensils. They allow an older adult to continue eating on their own, but without the burden of using utensils, a skill that may become quite hard. Finger foods also take some pressure off of caregivers who feel like they must spoon feed an older adult with dementia who cannot use utensils.

Do your best to provide finger foods that meet the food likes and dislikes of a patient with dementia. Keep in mind that some finger foods might be easier to eat than others and provide foods that match the individual’s level of eating ability. For example, a sandwich is easier to hold and eat than something like chips and dip, which require more maneuvering and coordination.

Here are some finger foods to try out with your patients or loved ones:

Sandwiches, hamburgers, and wraps

Meatballs or sliced meatloaf

Sliced fruit

Granola bars

Trail mix

Toast with butter and/or jelly

Muffins, bagels, and pastries

Peeled hard-boiled eggs

Cubes of cheese

Cut-up roasted potatoes, sweet potatoes, or other small vegetables

Crackers with peanut butter

Carrots, celery, and sugar snap peas with hummus or ranch

Adaptive eating equipment and tableware

Now that we’ve briefly discussed independence in eating and finger foods, let’s chat about some of the extremely helpful adaptive eating equipment that can make a huge difference in eating ability for individuals with dementia.

There are tons of different types of adaptive eating equipment available, so in this section we will cover some of the common equipment and items that align most with common eating difficulties in patients with dementia.

Utensils with large, rubber handles: these are easier to hold than a standard fork, and some can be bent to unique angles. Some spoons also have small lip around the edge to prevent spills while the spoon is in motion to enter the mouth.

Plate guards and food bumpers: these are attached to the edge of a plate and provide a surface for individuals to push food against, making it much easier to get food onto utensils while eating or scooping foods.

Cutout cups: these plastic cups have a small U-shaped section cut out which allows clearance of the patient’s nose. The design is ideal for patients who have limited neck mobility or have difficulty swallowing and need to have their chin tucked during the swallowing process.

Weighted or non-slip bowls and plates: these bowls and plates stay in place on the table when individuals eat. Weighted bowls are especially helpful for individuals who have a tremor and need the added stability.

Cups with lids and straws

An occupational therapist is your go-to professional to help with adaptive eating and increased independence at home.

Hand over hand feeding/other feeding techniques

If a patient with dementia requires physical feeding assistance from another person, the hand over hand feeding technique can help to maintain independence and meet their need for assistance.

This technique is performed by placing a hand underneath the patient’s hand and guiding the eating utensil from the bowl or plate to the patient’s mouth. The main objective is to do this withthe individual instead of for them or to them.

Promoting independence in eating among dementia patients

While being available to support a patient with dementia in their daily life is tremendously helpful, maintaining the patient’s independence as much as possible is of high importance. Independence promotes self-esteem, dignity, and confidence in patients. As a caregiver, you can promote independence in feeding to honor the patient’s autonomy and self-sufficiency.

Why independence is important

Many patients with dementia will lose their ability to perform day-to-day tasks, including eating, as the disease progresses. When patients are given the tools and resources that they need to continue performing tasks and activities on their own, this maintains a sense of normality.

A feeling of dignity develops from independence and has a positive influence on the patient’s life. Regardless of the medical condition an older adult has, each and every older adult deserves to be treated with dignity and respect. Dementia is no exception.

The role of the caregiver in eating/dining

You may feel as though your responsibility as a caregiver is to provide the right foods, create the best possible environment, feed the patient you are caring for, and make sure that the patient eats adequately no matter what.

This is a BIG undertaking, and is probably completely overwhelming! Let’s break this down and discuss what your role is.

Simply put, you have three roles as the caregiver:

Provide healthy, safe, and desirable foods and beverages to the patient you are caring for in adequate amounts.

Allow the patient to do as much self-feeding as they can. To support this, use adaptive feeding equipment, food modifications, and create a dementia-friendly eating environment for the patient.

Monitor food intake, note any food-related changes, and provide help with eating as necessary.

Caregiver division of responsibility

The Division of Responsibility in Feeding is typically used by parents as a model for feeding infants and children. However, we can apply the same core principles to caregivers involved in feeding patients with dementia. The classic Division of Responsibility in Feeding states that the parent is responsible for the “what, when, and where” of feeding, and the child determines “how much and whether” to eat the food provided by the parent.

If we modify this so that it is suitable for caregivers and dementia patients, the statement might look something like this:

“The caregiver determines what foods are provided and the patient determines how much, when, and whether to eat what the caregiver provides.” That’s it!

Emotion associated with poor intake and caregiver guilt

A common caregiver response to poor food intake in patients with dementia is guilt. Caregivers feel as though they are responsible for how much and what their patient or loved one eats. This is a huge weight for the caregiver to carry. In addition, when a patient struggles with eating this can cause them to eat less and lose weight. This can create a lot of different emotions for the caregiver. Feelings of sadness, hopelessness, frustration, and grief are common.

These are normal feelings in caregivers, but keep in mind the limitations of your role in feeding and that several dementia-related problems with feeding are not within your control.

Tube feeding in older adults with advanced dementia

When food intake significantly decreases and weight loss and malnutrition are present or become a concern, tube feeding is a common intervention. While tube feeding can be an effective and even life-saving intervention, there are some important considerations to be aware of when weighing the pros and cons of tube feeding.

Research and statistics on tube feeding in advanced dementia patients

Tube feeding comes with certain risks and drawbacks. Below are some important facts and statistics about tube feeding for patients with dementia to be aware of (14):

Healthcare providers have the responsibility to inform patients about the science, then support and reinforce the patient’s wishes. They should be considerate of the fact that a patient’s choice may not be the choice that you would make personally, and that support for the patient is necessary regardless.

Quality of life in dementia patients

When discussing food and eating, many of us have positive thoughts and memories. We think about how good it feels to nourish ourselves and enjoy meals with others. Maybe family time and traditions come to mind or you reflect on your favorite foods and recipes. Food plays a pretty big role in our quality of life.

For a patient with dementia, food and mealtimes may provide comfort, social interaction and connection to others, and a sense of purpose. It is important that quality of life remains at the forefront of care for patients with dementia.

Making decisions about tube feeding and alternatives to tube feeding

When it comes time to make a decision about whether or not to initiate or discontinue tube feeding for a patient with dementia, remember that many of the desired outcomes of tube feeding are not supported by scientific evidence.

Be specific about the goals of tube feeding and what you hope to achieve for the patient. Knowing this will allow the individual responsible for making health care decisions on behalf of the patient to make the best possible decision. Remember that the patient’s quality of life is the primary driver in decision-making. Whatever decision is made should improve or maintain quality of life.

Hand feeding a patient with dementia can be successful. In fact, the American Geriatrics Society reports that hand feeding has proven to be equally as effective as tube feeding for the following outcomes: aspiration, pneumonia, functional status, death, and comfort. Hand feeding also reinforces the pleasure and socialization that come along with maintaining oral intake as the primary source of nutrition (15).

Preventing dementia

Now let’s shift gears to talk about how to possibly prevent dementia in ourselves and our loved ones. A variety of lifestyle factors can assist with preventing dementia – including diet!

Link between diet and dementia

We have heard time and time again about the importance of a healthy diet for maintaining a healthy body weight, reducing our risk of cardiovascular disease, and preventing other chronic diseases, like diabetes and cancer. As more research is performed and published, we are learning about the connection between diet and brain health.

What we currently know is that diets low in total fat, saturated fat, and cholesterol, and high in whole grains, fruits, vegetables, low-fat dairy, nuts, poultry, and fish are beneficial in reducing dementia risk (16).

The MIND Diet

The MIND (Mediterranean-DASH Intervention for Neurodegenerative Delay) Diet combines principles of the Mediterranean and the DASH diet. According to epidemiological studies, compliance to the MIND Diet is associated with reduced risk of Alzheimer’s disease (17).

The MIND Diet encourages the following foods:

Green, leafy vegetables

All other vegetables

Berries

Olive oil

Nuts

Whole grains

Fish

Beans

Poultry

The MIND Diet recommends avoiding or limiting the following foods:

Butter and margarine

Red meat

Fried foods

Sweets

Cheese

Other ways to prevent/delay dementia onset

Here are some additional ways to potentially prevent or delay the onset of dementia (18):

Exercise regularly

Get adequate sleep

Participate in activities that are cognitively stimulating

Connect socially with others

Keeping the mind and body active is an important way to prevent or delay the onset of dementia. This includes maintaining social contacts and having some fun!

Role of the geriatric dietitian in advanced dementia

Having a strong team of health professionals involved in the care of a patient with dementia makes a very positive impact on their health and quality of life. One member of that team is a geriatric dietitian. A geriatric dietitian is uniquely qualified to assist in a range of different nutrition-related areas relevant to older adults.

Specific things that a geriatric dietitian can help with

Here are just some things that a geriatric dietitian may be able to help with when it comes to nutrition for patients with dementia:

Promoting and supporting adequate food intake

Preventing unintended weight loss and malnutrition

Making recommendations to optimize the eating environment

Providing recipes and helping with meal planning

Recommending supplements or specific foods to encourage based on individual needs and preferences

Additional reminders of why nutrition is important

To bring things full circle, let’s touch on some reasons why nutrition is so important not only for patients with dementia, but older adults in general.

First, older adults have various risk factors for malnutrition, including poor appetite, dysphagia, and dietary restrictions. It is important to encourage sufficient food intake to prevent malnutrition, as it can be detrimental to an older adult’s health.

Second, sarcopenia (the decline of skeletal muscle tissue with age) is prevalent in the older adult population. Because sarcopenia is a key cause of functional decline and loss of independence, ensuring adequate protein intake and maintaining skeletal muscle mass are essential (19).

Third, nutrition at the end of life should always be focused on the patient’s quality of life. Remember that the patient’s wishes and best interest should guide decisions around tube feeding and any dietary modifications.

Conclusion

Well, we sure have covered alot! We’ve discussed the different types of dementia, nutrition concerns in patients with dementia, decisions around tube feeding, and the prevention of dementia.

After reading this post, hopefully you walk away with an overall understanding of dementia, how you can help an individual affected by dementia with their nutrition, and what your role in the a patient’s nutrition care is.

Food and nutrition are powerful in improving and supporting our health, along with enhancing our quality of life and sustaining dignity and independence. The information and strategies outlined in this post will hopefully help you navigate the world of nutrition for patients with dementia and add a few tools to your toolbox so that you can provide the best care possible.

Note from Katie Dodd, The Geriatric Dietitian: This post was written by Morgan Kuiper, dietetic intern with Oregon Health Sciences University. I am currently mentoring Morgan and am so impressed with the hard work she is putting into everything she does. Wasn’t this article the best? Morgan aspires to complete her Masters degree and obtain a job working as a clinical dietitian in the future. Thanks Morgan!!

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About The Author

Katie Dodd, MS, RDN, CSG, LD, FAND is a Registered Dietitian and Board Certified Specialist in Gerontological Nutrition. She specializes in geriatrics, malnutrition, and end of life nutrition. Katie holds a Master’s degree in Food and Nutrition and is a Fellow of the Academy of Nutrition and Dietetics.